Since my December 2, 2005 Non-Hodgkin Lymphoma diagnosis, I've been on a slow-motion journey of survivorship. Chemo wiped out my aggressive disease in May, 2006, but an indolent variety is still lurking. I had my thyroid removed due to papillary thyroid cancer in 2011, and was diagnosed with recurrent thyroid cancer in 2017. Join me for a survivor's reflections on life, death, faith, politics, the Bible and everything else. DISCLAIMER: I’m not a doctor, so don't look here for medical advice.

Monday, March 20, 2006

March 20, 2006 - In Praise of DIY

When Claire and I were living in Scotland some years back, we’d occasionally come across a “DIY Store.” We soon learned the initials stand for “Do It Yourself.” A DIY Store is one that sells home-improvement and craft items, for the amateur carpenter, plumber, electrician or other tinkerer.

I’m learning that cancer treatment is, at least in part, a DIY enterprise. We’ve had a couple of experiences in recent weeks that have reinforced for us the value of remaining proactive and engaged with the whole treatment process.

The first incident occurred just after my last appointment with Dr. Lerner. The Doctor told us he wanted me to have a CT Scan in two to two-and-a-half weeks – allowing sufficient time for the results to get back to him prior to my fourth chemotherapy treatment (which is coming up this Wednesday). I could either call the hospital myself to schedule this test, he told me, or his office staff could do it.

I’ll let the office staff do it, I decided. They’re the pros at this: why not let them go through the process of contacting the hospital, and of getting pre-certification from my insurance company? Besides, a doctor’s office probably has more clout with the hospital authorities than a humble patient.

Wrong decision. There was some sort of communications breakdown. First, the request to schedule the test somehow got misfiled, and it wasn’t till a week later – after some prodding from me – that I finally got a call telling me when the test would be. It would be on Wednesday, March 22nd.

“It can’t possibly be that day,” I said to them. “That’s the day of my next chemo treatment, and Dr. Lerner wants to have the results by then, so he can make any medication-dosage adjustments that may be needed.”

“Well, the doctor’s written instructions say, ‘Schedule it in two to two-and-a-half weeks.’”

“That was two to two and a half weeks from my last appointment with him, not from the day when I called you back to say I hadn’t heard back yet.”

“I’ll check with the doctor, and get back to you.”

Well, someone did evidently check with the doctor, and sure enough, someone called back to tell me the test had finally been scheduled at the proper time – and just when I had been saying all along that it needed to be scheduled. I would have saved myself a whole lot of time and effort by calling to schedule the test myself, even if it meant making my own call to the insurance company for pre-certification. I’m learning that “DIY whenever you can” is a good, practical rule for the cancer survivor – and that’s exactly the rule I’ll follow in the future.

But the saga of the CT scan was not yet ended. A day or two after the test, I got a phone call from the file room at Ocean Medical Center. It seemed they couldn’t find my CT scan films from last fall, to which the radiologist wanted to compare my latest results. The last record they had was that the films had been sent to Memorial Sloan-Kettering Cancer Center in New York, for my consultation with Dr. Portlock.

I remembered receiving an envelope from Sloan-Kettering with some diagnostic films in it. I checked the envelope, and found that, while the PET scan and MUGA scan results were there, the CT scan results were not. A phone call to Sloan-Kettering resulted in a promise that they would send the CT scan films to me immediately, by overnight delivery. (Better have them sent here to me at home, I thought to myself; that way, I can be sure they arrive, then drive them over to the local hospital myself, rather than risking them getting lost somewhere along the way. DIY!)

As of this morning, I’ve still not received the CT scan films. I call Dr. Portlock’s office, only to learn that the person I talked to early last week is not in today, and all the information about the shipping of my scan results is in her computer. No one else has the password to get onto her computer. Could you call back tomorrow? OK, if I must.

I call Dr. Lerner’s office, to find out if there are any further developments with the radiologist. I haven’t heard a thing since the file room clerk called me last week. Was the radiologist able to analyze my most recent scan results, anyway, even without the earlier results? Was it possible, perhaps, to compare them with the PET scan films instead (which, after all, are supposed to display my tumors in even greater detail)? No one in the doctor’s office seems to know. They promise to check on it and get back to me. But by the end of the day, no one’s called back. I’ll call again first thing in the morning – but my fear is that all this effort to get the CT scan scheduled in time may be for naught, because of this comedy of errors involving multiple people.

It’s a complicated business, cancer treatment. I’m learning that it’s best to be as proactive as possible, to ask questions, to keep checking back. And even then, mistakes still happen.

3 comments:

Anonymous
said...

your experience is so typical of today's health care system and in fact, business in general. Lots of frustrating time wasted telephoning, often with no good outcome. Sometimes one cannot DIY! Hope all ends well!

Carlos,Should any records need to be pulled from a NYC hospital and they drag their heels, let me know. It's the rare chance for me to swing by and use my size to get things done "NOW." The simple pleasures in life (just using God's gift of my size!) :) keep up your strength - and EAT! You're doing well!LoveAndy

Andy, I love it! I've assembled lots of resources to help me get through this process, but now it seems I've got my own "muscle" as well!

This sounds a little like how Tony Soprano would do cancer treatment. ;)

(Actually, anyone who knows my cousin Andy knows he's as kind and caring as they come - but he also happens to be something like 6'7", and he's learned over the years that his height does make it hard for people to ignore him.)

BTW, on the subject of eating, that hasn't been too much of a problem. True, I don't have much appetite for the 3 or 4 days after a chemo treatment, but the cumulative effect of the massive dose of prednisone I'm getting is just the opposite of what you'd expect - the drug causes a puffy, round face, and it boosts the appetite. So, I've actually gained weight since starting this process. (Oh well, there goes the one silver lining I could think of from this particular cloud - except for beating the cancer, of course!)

About Me

I am Pastor of the Point Pleasant Presbyterian Church, a 450-member congregation in Point Pleasant Beach, New Jersey. I also serve as Stated Clerk of the Presbytery of Monmouth - a regional governing body composed of 45 Presbyterian Church (U.S.A.) congregations in central New Jersey. From time to time I teach Presbyterian Polity at Princeton Theological Seminary and Presbyterian Studies at New Brunswick Theological Seminary. I am married to the Rev. Claire Pula, Director of the Bereavement Program, Meridian Hospice. We have two children: Benjamin, a singer-songwriter, and Ania, an artist. I write two blogs: "A Pastor's Cancer Diary," in which I reflect on my ongoing experience as a cancer survivor (Non-Hodgkin Lymphoma, also Thyroid) and "Monmouth Presbytery Clerks' Corner," a place for Clerks of Session and other interested folks with an interest in Presbyterian polity (church government) to gather online.